Kidney Disease/ Dialysis/ Kidney Transplant? (infection, doctor, treatments, medical)

[quakerchick]

Is their anyone who has ERSD and had to move? What were all the things you had to consider when moving?

[Flamingo13]

Why would someone have to move? No dialysis centers around?

[quakerchick]

My mom has no family everyone has moved out of nyc and she wants to come where we are.

[Flamingo13]

Well, as long as she find a nephrologist and a dialysis center she should be fine. She needs to research transplant centers and register for one if she's a candidate.

[amberlina26]

If she's already on dialysis, the social worker at her current clinic should help her with the planning. Most centers want a month notice so they can get all the medical records transferred and figure out what days and time she would be on.

You can research dialysis centers near you. Compare things like times they're open, patient mortality rates, infection rates, etc. ProPublica has a great site for comparing. Dialysis Facility Tracker - ProPublica Once you've found the closest ones, you can check on nephrologists that work with those clinics and research them.

You said she lives in NYC. How far would she be moving to get to you? If it's not a move that can be done in a day, might be better off having her fly to you and move her belongings separately. Reason for this is that if she's already on dialysis, she would have to stop somewhere along the way for dialysis if it is more than a day trip. That would take a lot of planning. She'd have to figure out when and where she'd be stopping and let the clinic know ahead of time. Make sure she's there on schedule.

As Flamingo said, she would need to research the transplant hospital. If she's already signed up with one, they could help with that. She might be able to get her time with the current hospital waiting list transferred to the new one.

My husband has been on dialysis for about 4 1/2 years now. He did dialysis in the center for most of that time. We just recently started doing it at home. If you ever have questions, feel free to message me.

[quakerchick]

Thank you she has peritoneal dialysis so she does 4 treatments a day every 4-6 hrs so she would have to fly to va from nyc. I was very concerned about her losing he spot on the list. Shes is having more complications due to side effects on the home dialysis.

[Flamingo13]

Originally Posted by quakerchick

Thank you she has peritoneal dialysis so she does 4 treatments a day every 4-6 hrs so she would have to fly to va from nyc. I was very concerned about her losing he spot on the list. Shes is having more complications due to side effects on the home dialysis.

My husband was fortunate, he was only on dialysis for 15 months before receiving a transplant. Good luck.

[jtur88]

I have a friend in Quebec, who had to move about 100 miles after he started home dialysis. There were no significant problems, and he had no family to help him, he did it mostly by himself, with a friend doing the heavy lifting. He got a transplant call after about a year, but then it was cancelled because when the kidney arrived it was found to be too damaged for transplant, so he is back to waiting again, but at least he knows there is a realistic chance. In Canada, he pays nothing for anything, dialysis, transplant, it's all covered by the provincial health plan. Just the basic affordable monthly premium.

He had been living in a very small town in the mountains, and moved to the city to reduce his frequent winter drives to the hospital and doctor appointments.

[amberlina26]

Originally Posted by quakerchick

Thank you she has peritoneal dialysis so she does 4 treatments a day every 4-6 hrs so she would have to fly to va from nyc. I was very concerned about her losing he spot on the list. Shes is having more complications due to side effects on the home dialysis.

UNOS has rules about transferring wait time so you'll want to check it out before she moves. http://www.unos.org/docs/Multiple_Listing.pdf Go down to page 4 and it addresses transferring wait times at the bottom.

"Keep in mind that if you end your listing at one program before another program formally accepts you, you may risk losing all previous waiting time."

Sorry to hear your mom is having problems with peritoneal. There's a group on Facebook called Dialysis Discussion Uncensored and there are people on there that do all forms of dialysis, not yet on dialysis, and those that have transplants. Quite a few have done PD at some point and might be able to help with any questions you have about that. My husband does home hemo dialysis so I don't know anything about PD.



Flamingo13- Congrats to your husband for getting a transplant and getting his life back! Prayers that his kidney has a long life!

[Flamingo13]

Thank you - he's dong great so far - 14 yrs. out